Gastroparesis and Ehlers-Danlos Syndrome

I know I've rather slowed down with the writing. I always have plenty to say but sometimes I need to keep things to myself a bit. However I do realise that not writing means that you guys miss out on all my wonderfully happy stories! So I thought I would top you up with the joys of my life and all the little challenges it brings. Today I'm merely ranting out loud but I promise to post a more personal blog soon.... I've been thinking a lot lately about other peoples perception of what my life entails. Obviously not those who actually take the time to find out, those who send me messages because they've not heard from me in a while...you guys are fine! No, I'm talking about those who choose to judge from a thousand paces purely on the fact that you have put a little make-up on! Just want to get this out there... YOU GUYS SUCK! Big time! What is it with this obsession that sick people must be: a) miserable   (sick people obviously NEVER smile) b) pale   (anyt...

RANT ALERT! Fuming doesn't even come close to how I feel right now. Life has been SO hard lately and getting all this down on "paper" in a coherent way might be a bit of a challenge but here goes! Rewind back to November (2014) my jej tube started to misbehave. It started with a niggle and what we thought was granulation tissue around the stoma. So I told my GI and went to the gp for some silver nitrate to burn off any troublesome tissue (nice huh). The granulation disappeared but the pain was getting worse and now it was weeping all the time too (infection was ruled out straight away). So, step two was to ring my team and get someone with experience to look at the tube and find out what was going on. December, I get an "urgent" appointment to see the surgeon who initially placed the tube for me, by which time I was having to take the dreaded oramorph to be able to get to the appointments! My mum and I attended the appointment together like we always do...

What is it really like to live with a  debilitating condition that may never go away? In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself?  So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by. Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new...